Piping up again!

My sister, who lives in Santa Fe, NM, has been here for the last 10 days visiting Mom and I. We grabbed our aunt last week and the four of us headed for Monterey Monterey Bay Aquariumand Carmel-by-the-Sea again. We had a wonderful time visiting the Montery Bay Aquarium (fabulous, incredible place well worth visiting if you’ve never been there!) and eating some lovely meals out. But Mom woke up quite sick Friday morning, so we came on home. It turned out she had a urinary tract infection, a common ailment in the elderly. After a tough four days, and trying two different antibiotics, she’s finally on the mend. Seeing her today, all bright-eyed and bouncy, you’d never know she’d been sick enough to end up in an ambulance on her way to the local ER.

I’m a little bummed, now. I just took my sister back to the airport. I love it when we get together and wish we could do it more often. She’s such fun to have around! We spend most of our time laughing. :)

I sent her home with this:

Rocky is Jami's beloved, goofy, most amazing bull terrier in the world. He's getting up there in years (sort of like Stallone) but he's enjoying a second puppyhood at the moment. Go Rock! The drawing was done with watercolor pencils, colored pencils, and ink on watercolor paper.
Rocky is Jami’s beloved, goofy, most amazing bull terrier in the world. He’s getting up there in years (sort of like Stallone) but he’s enjoying a second puppyhood at the moment. Go Rock! The drawing was done with watercolor pencils, colored pencils, and ink on watercolor paper.

A couple of nights ago I tried my hand at scribble-interpretation for a Twitter group for illustrators. The talented illustrator who created #3yroldscribble has her 3-year-old son draw a scribble each week, which she then posts on Twitter. The challenge is to “see” something in the scribble, illustrate it, and post it back to Twitter, including the hashtag #3yroldscribble.

So, I went ahead an interpreted and art-ed my little heart out. I posted it on Twitter last night, the very first time I’ve posted something to an art group on social media. Fun! I’m looking forward to comments from the other illustrators, most (if not all) of whom are far more experienced than I.

Here it is:

Scribble Hippo. Watercolor pencil, colored pencil, and inck on Bristol paper.
Scribble Hippo. Watercolor pencil, colored pencil, and inck on Bristol paper.

My rheumatoid disease intruded frequently during our travels and didn’t let up much after we got home. It ached and throbbed in my hands and feet, but also showed up as sharp, intense, but brief pains in my right groin as I walked. That’s arthritis in the hip–oh, joy–a problem I haven’t had for a very long time. I ended up having to find a CVS where I could buy a cane (I’d left my old one at home, not expecting to need it). The new cane helped a lot.

Today, I’m still fighting my hands and feet. It gets old, doesn’t it. Tomorrow I’m finally seeing my new rheumatologist; I’m hoping to convince him to switch me to another biologic. At nearly five months, Enbrel still isn’t working and my RD is steadily worsening. With luck, my new doc will agree. If not, I guess I’ll have to finish the full six-month trial. Sigh.

New Art ChairBut hey, it’s all good. Today the new drafting chair I ordered arrived. I’ll delighted with it. Unfortunately, the first chair I bought for my drawing table wasn’t quite tall enough, forcing me to put a pillow under my backside, hoping to sit up a little higher. It didn’t work very well, and I finally had to admit defeat. So–a new chair. It’s perfect!

Here’s wishing everyone a fun and relaxing Labor Day weekend. I’m ready for some autumn weather and colors, aren’t you? Thanks for reading!

 

No time for naps

Until recently, I wasn’t much of a napper. There was always too much life to live napping kittenand too much to do. I didn’t want to waste any time sleeping during the day, even when my rheumatoid disease gave me a lot of pain.

I lived for my first 14 years with RD blaming my near constant, bone-deep fatigue on being in pain, on being busy, and on poor sleep. Fourteen years of feeling guilty if I took a nap. Imagine my surprise when I learned, after having RD for roughly 20 years, that one of its major symptoms is fatigue. That it hits no matter how well you’ve slept, and regardless of your pain level…

Read more at RheumatoidArthritis.net.

Hi, all. I’m a bit late in posting this (I’m blaming RD brain fog because it’s the only excuse I have) but figure better late than sorry. No early bird jokes, please. ;)

If you’re the Twittering type, check out this Joint Decisions/Creaky Joints Twitter Chat tomorrow. RA Guy and the folks from Arthritis Introspective will be there to discuss the real mental and emotional aspects of living with rheumatoid disease, so there’s sure to be a lot of good information fluttering around:

Twitter Chat 2 Promotional GraphicStop in, learn, ask questions, and make yourself heard in real time with real people who care.

Checking in, finally …

Oh, I’ve neglected poor RheumaBlog, and you, for so long! I wish I could say it was because I was out galavanting, exploring the world, and having adventures, but it’s nothing as exciting as that.

A quick graphite sketch of my shy but lovely little cat Emma.
A quick graphite sketch of my shy but lovely little cat Emma.

Instead, I’ve been right here at home. Which doesn’t mean I’ve spent all my time sitting around on my hiney–no, I’ve had Things To Do. I’ve also been coping almost daily with more RD pain than I’ve had in years.

As has been my old rheuma-dragon’s wont, the trouble has been mainly with my hands and wrists, though he’s been nipping and gnawing at my feet now and then, too. A couple of times, he’s tried out my knees, and one unhappy time he chomped

Three Owls. Colored pencils on paperboard coaster.
Three Owls. Colored pencils on paperboard coaster.

into my left shoulder (always his fave, for some reason).

The pain the dragon inflicts is truly unpleasant. Fortunately, the worst attacks have been short, lasting only for a day or so. But the Neverending Flare–the background pain that never stops–has slowly increased in intensity so that my hands, or feet, or both, are always in distress. As we all do, I try my best to ignore them, but it’s gotten a lot harder to do. I find myself taking more pain medication than I want to.

And, though I’ve jabbed myself once a week with my latest miracle drug, Enbrel, for almost four months now, the only change has been for the worse. I have an appointment with a new rheumatologist the first week in September (my old,

Flowers. Corlored pencils on paperboard coaster.
Flowers. Corlored pencils on paperboard coaster.

dearly-loved rheumy up and moved to the other end of the country), so we’ll see what he has to say. I corresponded by email with my old doc just before he left, and I asked about the possibility of trying a new biologic. He said to be patient: the VA requires a six-month trial before any new med will be approved. So, even though I’ll be seeing the new rheumy, I know nothing will change until at least the end of October.

Silly Owl. Digital drawing done with my index finger on my smart phone.
Silly Owl. Digital drawing done with my index finger on my smart phone.

This is frustrating. I know I’m singing to the choir, but waiting for meds to work has to be, after enduring sometimes awful pain, the worst part of this disease. We hear how wonderful these new biological drugs are, and about how many people like us have had their disease slowed drastically and their symptoms all but relieved by them. And yet, for some of us, nothing happens.

I started Humira a year ago October after deciding, with my rheumy, that my symptoms were steadily worsening in spite of the three-DMARD cocktail I’ve taken

Color Cat. Colored pencil on sketch paper..
Color Cat. Colored pencil on sketch paper..

for the last four years. So, in addition to them, I took Humira for six months. It didn’t have any effect. That trial finished, the VA approved Enbrel. And of course, it hasn’t worked so far, either. My rheumy said not to lose hope–it can take six months for these drugs to work. But I’m sorry, I’ve lost hope anyway. At the same

Dragonfly and Morning Glories. Watercolor and colored pencil on paperboard coaster.
Dragonfly and Morning Glories. Watercolor and colored pencil on paperboard coaster.

time I’ve taken these powerful but useless drugs, my RD symptoms have steadily worsened. Along with the constant pain, I’m now also dealing with frequent debilitating fatigue, a symptom I had little trouble with in the past.

But enough complaining. In spite of the dragon, I’ve been doing a great deal of writing for RheumatoidArthritis.net. Please go check it out. My posts are archived

Flowers and Birds. Colored pencil on paperboard coaster.
Flowers and Birds. Colored pencil on paperboard coaster.

there, of course, but there are a great crew of other talented writers to sample, as well. All of them have rheumatoid disease at various stages and intensities. I’ve never seen so much good, solid information wrapped up in excellent storytelling anywhere before. It’s well worth your time.

And yes, I’ve been playing with art. I love my new table, chair, and task lamp. I’m starting small and slowly relearning old skills, but I’m really enjoying it. And I’ve been exploring the art and creativity of other artists, many of them published professional illustrators, online. Illustration is the corner of the art world I’m most interested in and have the most natural affinity for. So the more I can learn, the better.

I’ve scattered some samples of what I’ve been doing around this post. I hope you’re enjoying looking at them as much as I did making them.

Finally, Mom has been up and down, heath-wise. Nothing serious, but it’s hard to say from day to day how she’ll feel, so I have to be prepared all the time to stop everything else to take care of her. And, the time is coming, soon, when she’ll have to quit driving. She’s become very impatient in traffic, and her memory is beginning to fail her. I worry about her when she drives, but I know how hard it will be for her to lose that last bit of independence. It’s heartbreaking.

Anyway, once she stops driving for good, I’ll be her full-time chauffeur. With my RD being so ugly these days, I worry about that. Another reason I wish these danged wonder drugs would just go ahead and be wonderful!

So. That’s what’s been keeping me busy and away from this blog. I hope you’ll all forgive me for being away for so long. I’ll try to do better in future.

Out of a Table-sized Box …

… comes an art-sized table.

When I started putting my new drawing table together on Saturday, I discovered that it would require screwing in about a thousand screws. My hands just aren’t up to that, unfortunately. So, after a bit of thought, I decided to head to the hardware store to buy myself (hopefully) an inexpensive electric screwdriver.

An hour or so later, I had one. Made by Black & Decker, and only $20! Yay! I headed home, opened the box my new tool was in, and came to yet another dead stop. It had to be charged for at least 16 hours before use. So, shaking my head, I plugged it in and put off building the new table until Sunday. Disappointing, really.

Sunday, mid-morning, arrived. After reading all the directions, it was clear I was going to need some help, even though I had a magic electric screwdriver. Along with screws, there were Alan wrenches involved, and of course, balancing one piece on or next to another other for joining by screws and Alan thingies. So I enlisted Mom. To my surprise, she was happy to help!

And so, two hours later, after much discussion, a little arguing, occasional grunting, much laughter, a few cries of dismay, and finally, an exhausted high-five, we were done. My drawing table was ready to use!

I cleaned up the construction mess, unboxed the task lamp, and attached it to the table. Both are “vintage” styles, and they look great together. Then I laid out my art things and a work-in-progress that I’d had to stop working on when we moved back in September, and as a final touch, put my Laughing Buddha at the top of the table, overlooking everything. Gazing at it made me smile. There were other chores to take care of Sunday, though, so no opportunity to use it all, yet. But Sunday night I went to bed a sore but happy camper.

Today, I had a writing assignment to complete, but tomorrow I’m planning to give the whole day over to art.

My hands are flaring painfully as I write this, and I’ve been alternately icing and heating a flared left shoulder. Still, I’m hoping for a restful night’s sleep tonight, and a mild-pain day tomorrow.

Here’s my already-beloved art-making place:

New Drawing Table

Revisiting an Old Passion

Vintage Drafting TableI took a big step forward this week. For some time now I’ve yearned to start drawing and painting again. The talent I was born with is still with me, but it’s been decades since I’ve created anything beyond the occasional doodle. Since moving to our new apartment back in September of last year, I’ve been slowly collecting art supplies: paper, paints, colored pencils, drawing pens in the hope that I could start exercising my art muscles again, practicing and burnishing old skills, and preparing myself to learn new ones.

But until recently, I’ve had no space to spread these things out where I could work on something off and on as time and my rheuma-hands permit. Creating art does take time, and the creative urge (at least for me) is easily squashed when I’m forced to get all my supplies out and then put them all away again an hour or two later every time I want to work on something. For me, art is a spontaneous undertaking: the muse beckons or time and inclination merge, and I need to get to work. Right then, not later, not after having to set the space up yet again. Not being able to do this was frustrating.

But now, I have a Room Of My Own (ROMO). For the first several months after Mom and I moved, we had to use the big third room in our new apartment to store all of mom’s excess stuff. But that’s all now in storage elsewhere. So, after saving my pennies for a while, and comparing prices all over the place, I finally took the plunge. OnTuesday this week I ordered and paid for a beautiful, vintage-style drawing table, a sturdy, ergonomic adjustable chair, and a good task light.

UPS is delivering them today. To say that I’m excited is an understatement. It’s been too, too many years since I’ve been able to have my art supplies out where I can work on my art whenever I have the time and the urge.

Of course, the rheuma-dragon is being particularly unkind these days. He’s taken to concentrating most of his fury on my wrists, hands, and fingers, and I sort of need those to make art. But I figure I’ll just take it slow. Do what I can, rest, pace myself. Make the whole process more contemplative, and use it as a distraction from pain and frustration.

When my new “studio” is put together, I’ll post a photo.

For me, the decision to buy these artistic tools cements my determination to be visually creative again, something I can add to my writing as a way to express myself and help me cope with life’s stresses and the particular anxieties that having rheumatoid disease causes. I’m  now a step closer to making that happen.

RA and the Zombie Apocolypse

ZombieWalkerBeing so “invisible” and able to do things alone and unaided in spite of my RA has given me great hope for the future. Chances are, when the Zombie Apocolypse comes, I shouldn’t have a problem. The monsters, like everyone else, may not notice me at all …

You can read more about how my RA will help me beat the End of the World at RheumatoidArthritis.net.

About your bones …

Updated at end of story, Thursday, May 28:

May is Osteoporosis Awareness and Prevention Month, a fact I only learned about late last week. And while the month is nearly over, awareness of this insidious, invisible, potentially devastating and even deadly disease is important all year ’round, not just in May.

Your bones are alive. A healthy body replaces dying bone tissue with new, strong, healthy bone tissue. But osteoporosis causes the bones to lose tissue faster than the body can replace it. The resulting brittle, lattice-like bone structure breaks easily. Even something as simple and everyday as bending over or coughing can cause an osteoporotic fracture.

Osteoporosis_Infographic

A broken bone is difficult for anyone. But for the elderly or those with compromised health, it can mean catastrophe: loss of independence, permanent disability, or even death. The most common fractures occur in the hips, wrists, and spine.

According to the American College of Rheumatology (ACR), about 4.5 million women and a little over a million men over the age of 50 have osteoporosis. It’s a “silent” disease; there are no symptoms. Most people don’t know they have it until they break a bone. You’re at higher risk of osteoporosis if:

  • you’re of older age (over 30, but more commonly over 50);
  • you’re female;
  • you have a non-Hispanic white or Asian ethnic background;
  • you have lowered sex hormone levels (mainly estrogen loss during menopause and after);
  • you have a small bone structure;
  • you have a family history of osteoporosis;
  • you have inflammatory arthritis (rheumatoid disease, ankylosing spondylitis, etc.);
  • you take certain medications, such as corticosteroids;
  • you smoke cigarettes
  • you drink alcohol to excess. More risk factors can be found here.

There are some pro-active and simple steps you can take to avoid osteoporosis, or to treat it if you already have it:

  • If you smoke, stop. Smoking hastens bone loss.
  • Limit alcohol to three or fewer drinks per day.
  • make sure you’re getting enough Vit. D from your diet, sun exposure (but be wary of sunburn) or from supplements. Vit. D works in tandem with calcium throughout the body in many different ways, including building healthy bone tissue.
  • Do weight-bearing exercise regularly. It can be as simple as brisk walking for a half hour a day, five days a week, or doing gentle weight training or resistance exercises for the same amount of time. Many people mix them: walking one day, exercising the next, or 15 minutes of one, then 15 minutes of the other each day. Exercise is vital to build and strengthen bone tissue and to build and strengthen the muscles that support the joints and bones. Note: Tai Chi and yoga are excellent forms of exercise for osteoporosis. They strengthen muscles and bone, and they improve your balance, making falls much less likely.

Once osteoporosis is diagnosed, treatment is available in the form of medications, too. Some, called bisphosphonates, slow bone loss. They include such well-known drugs as Fosamax and Boniva. Other drugs may include Calcitonin or selective hormone replacement therapy.

Rheumatoid disease can cause changes in the bones that can make osteoporosis more likely to occur. It’s smart to have your bones scanned to determine you bone mineral density, or BMD, According to the ACR, “dual energy x-ray absorptiometry (referred to as DXA or DEXA and pronounced ‘dex-uh’) is the best current test to measure BMD. The test is quick and painless. It is similar to an X-ray, but uses much less radiation.”

Unfortunately, osteoporosis can sometimes lead to the need for knee or hip replacements. The American Recall Center has asked me to let you know that one option for knee replacements, the Zimmer Persona Tibial Plate, has been recalled due to issues that have forced some people back into surgery. To learn more about this, visit http://www.recallcenter.com/zimmer-persona-knee-replacement/ **

For further information, visit the ACR’s osteoporosis web page, or see the National Institutes of Health’s RA/Osteoporosis web page,

**UPDATE:  With the unfortunate weakening of the bones, sometimes osteoporosis can lead to knee or hip replacements. Be sure to always treat any surgery with care and ask appropriate questions. Do your research on the device that’s going to be put in. There has been a few recalls on these, the Zimmer persona knee recall being one for the loosening of the tibial plate. Mishaps like these can happen, which is why it’s important to get educated.

Accepting the Unacceptable

Wren accepts her increasingly crepe-y neck and her rheumatoid disease. She achieves peace of mind even as she applies moisturizer daily and injects Enbrel weekly. Acceptance isn't giving up or giving in.
Wren accepts her increasingly crepe-y neck and her rheumatoid disease. She achieves peace of mind even as she applies moisturizer daily and injects Enbrel weekly. Acceptance isn’t giving up or giving in. It’s more like choosing your fights.

“Acceptance” has become an almost dirty word, but it shouldn’t be. Some people have told me that if I “accept” my rheumatoid disease, I’m giving in to it. I’m giving up, not fighting, not trying to get better. These people don’t have much patience for me. I just smile, shrug my shoulders, and hope they never have to live with a disease like this one.

Read the rest of the story at RheumatoidArthritis.net.